My name is Jude (pronounced like Judy) Rene' Jacobs. I live in Marion, Ohio, with my husband, Tighe, and our three children: six-year-old Thaddeus Robert (T.R.), four-year-old Maddissen Nichole, and nearly-two-year-old Mayson Dominick.
Tighe works for the city of Marion for the schools; as for me, I am a stay-at-home mother and homeschool instructor. I am also a nurse to our youngest child, who was born with special needs.
At the age of one year (and nine months), Mayson was found to have problems absorbing copper into his body; as a result, he had problems including seizures, failure to thrive, breathing issues, and other noticeable signs; when he was taken for tests, it was discovered that he had a disorder called Menke's syndrome, which can be fatal if it is severe enough.
Menke's syndrome causes increasing disability and mentail retardation. Ultimately, Mayson will not be able to do anything for himself. It is a terrible, horrible, awful way to live; no child, particularly babies or toddlers like Mayson, should ever have to suffer!
Mayson cannot walk, and it is doubtful that he even will. His muscles are just too weak. He is often on oxygen and his resistance to germs is very poor: he can get sick at the drop of a hat. One minute he can be laughing and feeling fine, playing with Maddi and Thaddeus, and the next, he is in the hospital, fighting a raging case of pneumonia or some other type of infection, or getting over the effects of a very severe seizure incident.
It has been a very hard two years since Mayson was first diagnosed, but I am determined to give him (and my other two children) the best life possible. I take them with me whenever I go somewhere, but if it is cold out, I bundle Mayson up like it is 30 degrees below zero (so he can stay warm; he has difficulty maintaining his body temperature) and make sure that I am not around anybody who happens to be sick. I want him to enjoy what the world has to offer and nothing delights me more than to hear his sweet little giggle whenever he sees or experiences something new.
Thaddeus and Maddi are very good with their small brother and they have learned about acceptance and tolderance better than most people. They know and understand that their baby brother is special and enjoy helping me take care of him. They love giving him his bath or his "meal" (Mayson is fed by a tube in his stomach; he gets his "meds" the same way, as he cannot chew or swallow without the risk of choking), dressing/undressing him, and changing his diaper. They love reading to him, cuddling with him, and playing with him, anything to make him laugh or smile.
I thank God for the support system I get from my church and other mothers who have children like mine. I belong to a network of moms who have kids with special needs and they have been very valuable in helping me cope because I know now that I am not alone: there are plenty of other mothers who are going through the same hardships as I am.
Well, it is time for me to fix Mayson his "supper" and give him his afternoon dose of meds, as well as get the children's lesson plans for tomorrow's homeschool session, so I will go. I will write in here another time; until later, this is Jude Jacobs saying so long! God bless you!
~Jude, your new friend from Ohio.